Travelling with MDS: Essential tips

Middle-aged couple on holiday, wearing straw hats, walking arm in arm through a European city street
Many people living with Myelodysplastic Syndromes (MDS) or Chronic Myelomonocytic Leukaemia (CMML) still enjoy travelling and holidays, including those who are transfusion-dependent. With a bit of forward planning, a change of scenery and break from routine can be great for general wellbeing and mental health, both for patients and their families or caregivers.

Travel planning tips for MDS/CMML patients

Whether you’re planning a weekend getaway or a longer break abroad, here are some essential travel tips for MDS and CMML patients.

 

    • Talk your plans through with your clinical nurse specialist or GP, in case they have any concerns. They may be able to provide a ‘fit to travel’ note, which is helpful when shopping around for insurance.

 

    • If your destination is somewhere known for extreme humidity, temperatures or altitudes, check to see if this might aggravate your symptoms.

 

 

    • If you're travelling with someone, bring twice the amount of medication you’ll need—keep one set in your own bag and the other in your companion’s, just in case one gets lost.

 

    • Check the current rules about carrying medicines on flights.
        • GOV.UK has a helpful general guide on carrying Medicines and medical equipment when travelling.
        • Check with your airline before you travel—airlines like British Airways and easyJet have detailed guidelines on their websites about cabin storage, declaring liquid medications, and bringing medical equipment on board.
        • Keep medicines in labelled packaging and bring prescriptions and/or a doctor’s note, especially for controlled or liquid medications.
        • Stay informed on destination-specific rules - some countries (e.g. Dubai) now restrict certain medicines in cabin baggage - check embassy or country travel advisories.

 

    • Be realistic about how much you can do – it’s tempting to pack a lot into a trip somewhere new, but even getting on and off coaches can be very tiring.

 

    • Consider keeping a symptom and medication ‘log’ which you can update each day.

 

    • Book airport assistance (though be aware any travel companions may not be included)

 

    • Try to travel light - wheeled luggage can still need loading onto belts or into lockers.

 

    • Even when it’s not a requirement, consider wearing a mask on flights and on public transport and have anti-bacterial wipes to hand.

 

Travel Insurance

Until recently, many insurance companies didn’t have MDS (and other rare cancers) on their radar, so would refuse cover or charge premiums higher than the cost of the holiday itself.  Luckily this is changing as awareness of the condition increases.
Middle aged couple wheeling a suitcase at the airport

Travel insurance for MDS & CMML with 'Insurancewith'

Multi award-winning company Insurancewith was started by industry expert Fiona Macrae after she had problems securing affordable travel insurance after being diagnosed with breast cancer.  Fiona and their medical underwriters kindly accepted our invitation to speak to us directly so they could learn more about MDS.  Although acceptance can never be guaranteed (other factors can come into play such as length of holiday, destination, current treatment regimes, age and other medical conditions), Insurancewith is now fully aware of MDS, and are currently tweaking their discovery questions to make the process as clear and fair as possible.  They have pledged to do all they can to provide MDS patients with comprehensive cover at a reasonable price.    

Other Insurance companies our members have used 

Generally, as more providers become aware of MDS the market will become more competitive and premiums will go down.  Other companies our members report having recently secured cover with include StaySure, Global Travel, Insure and Go, and Medical Travel Compared. If you have ‘rolling’ travel insurance as part of a bank account package do remember to let them know about the MDS diagnosis, as not doing so may invalidate the policy (someone on our team got caught out this way and lost £800 on a holiday deposit!). 

Useful links to help you plan

Here are a couple of useful links to help you plan and make the most of your well-deserved time away